-----Oorspronkelijk bericht-----
Van: Arthur Hirsch <[log in to unmask]>
Aan: [log in to unmask] <[log in to unmask]>
Datum: zaterdag 10 juli 1999 22:40
Onderwerp: PAN Forum report


>> I have written a report on the PAN Forum for my sponsors, and have posted
it on my website at:
http://www.fortunecity.com/meltingpot/farley/817/advocacy.html <<

Here it comes!!

Hans.


=======================

After attending the PAN (Parkinson's Action Network) Public Policy Forum in
late June, 1999, I wrote the following article, which pretty well sums up,
in my mind, the current status of advocacy in the United States as of that
time.

Parkinson's Action Network

6th Annual Public Policy Forum

Raising our Voices for a Cure
Washington, DC - 27-30 June, 1999

The Dana Alliance for Brain Initiatives, highly respected in Congress, has
proclaimed that Parkinson's will likely be the first of the neurological
diseases to be cured and that from the cure for Parkinson's they will
develop the cures for other neurological diseases - possibly including
Alzheimer's, Huntington's, and many others. If there be no other reason,
this alone is reason enough to fully fund Parkinson's research as enacted
into law as a part of the Udall bill.

But full funding of the $100 million has not yet happened. NINDS (National
Institute of Neurological Diseases and Stroke), which receives about 2/3 of
the funds for Parkinson's research, was asked to show how this funding is
distributed. They produced a list of projects funded in 1998 that totals $73
million. Scrutiny of these projects by a group of scientists eminent in the
field reveals that only 45% of this money was spent on focused Parkinson
projects. Another 29% was spent on related projects, which might have
results significant for Parkinson's. And the last 26%, the scientists
determined after reading the project abstracts, bore no relation to
Parkinson's at all.

For all of NIH (National Institutes of Health), the list of 1998 projects
arrived too late to be analyzed before the Forum. In 1997 the percentages of
a $89 million total had been 35%, 27%, and 38% respectively.

This is not acceptable. This is not in compliance with the Udall bill, which
has become the law of the land. It is not acceptable to us as Parkinsonians,
nor should it be acceptable to Congress, whose expressed will is being
thwarted. Through Parkinson's Action Network, we have tested the figures. We
must now explain to Congress that the figures presented by NIH are, shall we
say, tainted at the very least. And we must demand action on the part of
Congress.

For the most part it will be the agency whose accounting we criticize that
will carry out the research initiatives that we so badly need. It is to our
advantage that they be funded well, and PAN suggests the following
legislative priorities

Funding of NIH for additional spending on Parkinson's focused research, $50
million to go to NINDS and $25 million to go to NIEHS (National Institute of
Environmental Health Sciences). The former is the traditional neurological
science center of the NIH; the latter because of some vital and exciting
work that has been started linking Parkinson's to environmental causes.
Doubling funding of the NIH over five years. FY 1999 saw a 14% increase, and
we must continue at this pace. Parkinson's is an excellent example of how
strides in medical technology can save money and reduce pain, but it is not
alone. Our best chance to receive the funding we desire is to see that
research on other diseases gets funded too.
Continuing to fund the DOD (Department of Defense) "Neurotoxin Exposure
Treatment Research Program" at $25 million. Their efforts over the last
three years in tying the environment to Parkinson's have yielded significant
results so far, and this is no time to stop.
But it is not sufficient, as noted above, to only dictate that money be
spent - the money must be spent as dictated and it must be spent so as to
achieve results. It is too easy to spend money - especially somebody
else's - and forget that responsibility for expenditure includes the
function of review as well. Sometimes it can be harder to keep track of
where the money goes than just to spend it - but this is what we must ask
our Congressmen and Senators and their staffs to do.

As for us, it would be unwise to ask that the money be spent unless we know
that there are productive places to put it. But indeed, many there are!

The theme for PAN's Public Policy Forum this year was "Raising our Voices
for a Cure." Several years ago, that might have seemed over-optimistic. But
then again, the relief being provided to many through DBS (deep brain
stimulation) might also have sounded like so much fiction not very long ago.

Scientists seem to hold a lot of hope for stem cell research to provide one
possible cure. Stem cell are those cells which maintain the ability to grow
into any of several particular varieties of cell. For example, the
fertilized egg is an example of a totipotent stem cell. It divides down,
first producing other totipotent stem cells and eventually producing all
type of cells in your body.

Scientists have learned how to produce many totipotent stem cells from one,
and experimentation is taking place to implant these totipotent stem cells
into a brain and have them become dopamine producing cells. It's not without
problems, but it has been shown to work in some cases. The possibility of
rejection is one such problem.

Scientists have long considered that the adult body contains no stem cells,
but recent studies have shown this not to be true there do exist pluripotent
stem cells - cells which can divide and become any of a certain cell - like
any type of skin cell or any type of muscle cell or any type of nerve cell.
Thus if we can get the right pluripotent nerve stem cell to the correct
location in the brain and activate it, we could possibly have a cure for
Parkinson's. The big advantage of this is that rejection is not a problem,
since no foreign cells are introduced. But making this work is still a
formidable, time-consuming task.

Although stem-cell research is promising and new, it does not represent a
basket into which we choose to place all our eggs. Other cures are being
pursued too.

Ultimately, the elimination of Parkinson's may come from eliminating its
source, not from curing the disease. Substantial strides are being made in
this direction, as well as in easing the pain and slowing the progress of
the disease.

This year the legislative agenda is not the simple "Pass the Udall bill"
that we had two years ago. Now it has to be, "make these appropriations,"
"sign a letter of support for focused research" (not discussed here) if they
have not already done so, and "review those research grants to ascertain
that they are focused indeed." Not an easy message to convey in a
five-minute interview with your representative or his/her medical aide, but
one that must be gotten across time and time again.

Do it with letters, do it with phone calls, do it with visits, do it by
attending town hall meetings, but do it. Raise your voices for a cure!

J. A. Hirsch - 9 July, 1999